Discussion Board Forums General Discussion Ambiguous CT scan and our struggles to get follow-up testing during COVID

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  • #99964
    Hannaha
    Participant

    Hiya Billy – Thank you so much for your thoughtful and informative reply, and for the difficult work you’re doing right now to keep our communities safe. Huge appreciation.

    I’ll pass your response along to my mom and her wife.

    We have also trying to move forward with the PET scan option, which had originally been denied by insurance when they wanted us to do the endoscopy instead. Hopefully this will help us find the right language to get the gears to move forward with a less-invasive imaging option. Another major contributing factor in all this is that my mom’s insurance had given her a one year allowance to treat the hospital where she had her surgery and post-op chemo as in-network, but that year ran out right in the middle of all this, and trying to get her set up with a new oncologist/get her insurance company to honor the referrals of her now-out-of-network oncologist/etc, adds to the Byzantine aspect of the whole situation. Not that anyone else can fix any of that. Just… Our country’s health insurance system is so frustrating.

    – Hannah

    #99954
    vtkb
    Participant

    I’m sorry to hear about the delay for your mom.  I know youre frustrated, so I will try to explain the thought process behind delaying endoscopic procedures. . Unfortunately Covid can be spread before symptoms appear, so anyone can have it, not know it, and spread it before feeling sick or showing any signs.  Travel history or known contact questions are useless at this time because its all across the US, and many people who have it aren’t being (or cant be) tested.  Endoscopies are one of the riskiest procedures for spreading COVID, because inherently even under sedation or general anesthesia, patients have a tendency to cough. Coughing will cause the virus to spread more, as it pushes the virus into the air (aerosolizes) it, where it can stay for hours. In Europe this has already been pointed at as a cause of COVID in some heathcare workers.  The GI doctor doing the endoscopy is literally inches away from the patient’s face, as is the nurse helping. Also, if the patient before your mom has it, your mom can also be at risk of catching it from the air in the exam room, since it will be impractical to deep clean the room (enough to kill the Covid in the air) between every patient.  I hope your mom can get a PET scan instead soon, or a repeat CT scan, or MRI as they poses a much less risk of spreading and catching COVID.   Good luck, but I wouldn’t be in a rush to get an endoscopic procedure done right now, especially if she can get a scan instead.  COVID is not “just like the flu” especially for older patients or patients with co-morbidities.

    -Billy

    – just some background info on me- I’m an anesthesiologist having seen the effects of COVID first hand (horrible), and unfortunately having to make the same decisions with surgeons and GI doctors about which outpatient cases are urgent, emergent, and truly elective.  I am not sure which scanning modality is best instead of the endoscopy, but your mom’s oncologist should know. I am also not suggesting delaying imaging for months on end, I’m just saying if your oncologist thinks it can be determined to see if its a reactive node vs a metastasis by a PET, CT or MRI, it may be safer (for COVID reasons) to get that now instead of waiting longer for an endoscopy.

    • This reply was modified 2 weeks ago by vtkb.
    • This reply was modified 2 weeks ago by vtkb.
    #99951
    Hannaha
    Participant

    Hi all-

    My mom has now been a year (2/26!) and change since her surgery for intrahepatic ICCA, negative margins, lymph nodes negative. Feb. 20, she did a CT scan to check how things are going, and one of the two radiology readings noted 2 enlarged lymph nodes near the liver not seen in her last scan (late Nov). Her oncologist says (i’m paraphrasing) “eh, maybe something to worry about, maybe just ‘reactive nodes,’ hard to say.” But he recommended a PET scan to better visualize things, which the insurance company denied, citing their view that a better test might be an endoscopic ultrasound. So the oncologist went ahead and sent a referral for the endoscopy. Very long story made shorter, there were weeks of back-and-forthing with the insurance company, our primary care physician, our oncologist at one hospital, and an oncologist at another hospital where we were first being treated, which FINALLY resulted in an approval to get the endoscopic ultrasound done in early-mid-March… Just in time for all the hospitals in Oregon to institute new guidelines that no “non-emergent” procedures go forward as the hospitals await an influx of patients and high demand for PPE. Now, we’re being given tentative mid-April dates for the procedure to be done, but with the warning that we may get pushed out further if conditions go downhill. It is hard not to be frustrated, knowing that for the moment, many Oregon hospitals are NOT overrun, and there ARE still available resources for my mom to be seen. We’ve also tried to go back to the original PET scan idea, since that would be a simpler procedure not requiring anesthesia or much by way of protective equipment, but that tack has had little success, either. Basically, my mom’s wife has been on the hospital every day, usually multiple times a day, with the insurance company and doctors offices, since the beginning of March. She’s exhausted.

    We are lucky in that my mom seems pretty healthy – she was having occasional nausea and indigestion in the weeks after the CT scan, but that seems to have leveled off (and who isn’t feeling nauseated in these days of pandemic?). She has no other symptoms – appetite is good, exercising daily, not jaundiced, etc. Still, it is a very strange position to be in, especially considering what we know about how quickly this cancer can move, to find ourselves waiting so long for a diagnostic procedure that would help us to know whether we should be lining up a new treatment approach, or taking a deep breath.

    Oregon’s Governor, Kate Brown, signed an executive order a few days ago directing hospitals to continue prioritizing procedures for patients whose well-being may be at risk if care is delayed, while slow-rolling everything else. The language specifically mentions those who are at risk of disease metastasis. Somehow, this directive does not appear to be having practical effect at the level of actual hospital committees, however.

    I’d be very curious to hear what others’ experiences have been in the past few weeks, and whether there are others who have found their care interrupted.

    Best wishes to you all-

    Hannah

    • This topic was modified 2 weeks, 1 day ago by Hannaha.
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